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As promised, this Foundation will be starting our own CCSVI section. It is theorized that MS may indeed be a vascular disease and that the resulting destruction of myelin comes from iron deposits in the brain (due to lack of blood flow) which triggers the autoimmune response. However, we’ve been a bit slow in fact-gathering, but there are so many valuable sources of information already on the web, so we are going to start with a compendium of those sites.

This Is MS Forums has many sections on research and discussion of CCSVI. Start here with their CCSVI Research section. They’ve done a good job at finding links to scholarly research.

The Reformed Multiple Sclerosis Society was started much like this Foundation because of one’s spouse fight for another’s treatment. Mr. Steven Simonyi-Gindele began the Society after his wife, Ruth, who suffers from Multiple Sclerosis, had the treatment for CCSVI.

Wheelchair Kamikaze, Marc, has written extensively on the procedure. Start here with his posting about CCSVI and his own experiences with it. It’s well-written and extremely informative. I urge you all to read his posting.

On Facebook, you can find the CCSVI in Multiple Sclerosis page. The comments from MS sufferers who have had the procedure are insightful and a good way to get in touch with someone you can talk to who has gone through the venoplasty.

Direct-MS dot com (DIRECT-MS, short forDIet REsearch into the Cause and Treatment of Multiple Sclerosis) has an information section on CCSVI. They are a Canadian group begun by families affected by MS and are now channeling most of their donation money into CCSVI research.

A new article in the Annals of Neurology has made its way across various blogs and discussions about Multiple Sclerosis around the internet. It’s about CCSVI. And when we saw this article’s head line here, “Cerebrospinal Drainage Not Tied to Multiple Sclerosis,” along with the disclaimer:

Several of the researchers on this study disclosed financial relationships with pharmaceutical companies, including Pfizer, Sanofi-Aventis, and Merck-Serono.

Our first reaction was that any study that is to be done (especially one involving a treatment that could potentially make MS drugs a thing of the past) the authors need to be free of any ties to pharmaceutical companies. The authors are:

All of the above pharmaceuticals make Multiple Sclerosis drugs and have a large stake in those drugs. They cost a lot of money. See more about how much money here, here and here. And here as well.

This Foundation is not going to go into the details of the findings of the study. That is best left to experts in this field.

And as we find discussions on this study, we will post them here like the one at the MS blog on About.com. I threw in my two cents as well.

This Foundation just wants to point out the conflicts of interest to demonstrate that studies like these need to be done by those free and clear of the ties as shown above, like being members of the board of Pfizer, Sanofi and Merck. Seriously.

The Reformed MS Society started much in the same way this Foundation started with one spouse fighting for the rights and treatments for another.

Mr. Steven Simonyi-Gindele began the Society after his wife, Ruth, who suffers from Multiple Sclerosis, had the treatment for CCSVI. It is theorized that MS may indeed be a vascular disease and that the resulting destruction of myelin comes from iron deposits in the brain (due to lack of blood flow) which triggers the autoimmune response.

CCSVI, or chronic cerebrospinal venous insufficiency, is treated with balloon angioplasty and stenting of the blocked veins.

The Reformed Multiple Sclerosis Society is your best source for information regarding the treatment for CCSVI. They are not beholden to donations from pharmaceutical companies. We will also start to keep our own section on CCSVI and update with information as it becomes available. I spoke with Elizabeth of the Reformed MS Society back in November of last year. They are a wonderful and accessible organization and if you have any questions, they will try and answer them. Their office number is 604-639-4405.

In short, the procedure was a “successful failure,” in that we successfully determined that I do have significant abnormalities in the vascular system associated with my central nervous system (a very important discovery), but those abnormalities unfortunately could not be remedied during the procedure.

And with the pharmaceutical companies regurgitating cancer drug after cancer drug as the “newest therapy” in their MS arsenal–reformulated and slapped with a higher price tag–it’s time for some real research into the disease and not research into how more money can be made from the disease, year-after-year with no end in sight.